BACKGROUND: Play is central to children's lives. Children living with palliative care needs experience disruption in their play. In this study, we sought to discover the characteristics and patterns of children's play when receiving care in…
An estimated one in six children in the United States suffers from a mental disorder, including mood, anxiety, or behavioral disorders. This rate is even higher in children with chronic medical illness. This manuscript provides a concise review of…
Perinatal loss may deeply affect the attachment relationships of mothers and their next-born children. The aim was to explore the subjective perceptions of mothers, who had fetal death during the first pregnancy, and their adult subsequent firstborn…
PURPOSE: To examine the experiences of parents who are caring for a child with a life-threatening or life-limiting illness (LTI/LLI) including levels of uncertainty, distress, hope, and self-efficacy to determine if there are significant variations…
BACKGROUND: Most children needing palliative care (PC) live in low- and middle-income countries. In Colombia, pediatric palliative care (PPC) knowledge among healthcare professionals (HCPs) is lacking as PPC is not included in the educational…
Children’s needs in pediatric palliative care (PPC) are complex and are determined by age, the course of the disease, family structure, and cultural background [1]. The child’s family system also has multiple needs which must be properly assessed and…
Examining reported costs for Children with Medical Complexity (CMCs) is essential because costing and resource utilization studies influence policy and operational decisions. Our objectives were to (1) examine how authors identified CMCs in…
BACKGROUND: Children's hospices provide a range of family-centred care services, including bereavement support. Not all hospices provide specific services for grandparents. AIM: To explore how a hospice-based bereavement support group supported…
Background: Approximately half of children receiving palliative care are under age five; however, there are a few studies exploring palliative care interventions for this population. The purpose of this study was to evaluate the effects of Reiki on…
INTRODUCTION: Palliative care involves management of medical, psychological, mental and social symptoms of children with life-threatening illnesses. AIMS: The article describes the organization and function of a multidisciplinary palliative care…
BACKGROUND: This study examined care needs and utilisation of psychosocial support services among parents of children who had received specialist paediatric palliative care, as well as the relationship between need fulfilment and grief. Possible…
INTRODUCTION AND OBJECTIVE: The family is a reliable and permanent source of support for every human being. It is the key link in the welfare system. The aim of the study is to assess parents' attitudes towards the occurrence of a difficult situation…
BACKGROUND: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. OBJECTIVES: Evaluate the use and feasibility of the Paediatric Carer Support Needs…
BACKGROUND: Mucopolysaccharidoses (MPS) are rare inherited metabolic disorders that come under category three of life-limiting conditions. Children born with this condition show no symptoms at birth, but its effects show as a progressive disease in…
Background: Many children with complex chronic conditions (CCCs) are supported by medical technologies. Objective: The aim of this study was to understand bereaved parent perspectives on technology assistance among this unique population. Design:…
This paper explores the ethical dimension of the opportunity to offer improved electronic patient-reported outcome (ePRO) systems addressing personal needs of pediatric cancer patients, their parents and caregivers, with regard to technological…
Children living with palliative care needs are less engaged in play, despite its importance in their lives. The environment may have a crucial role in supporting these children's play. Understanding the importance and impact of environmental factors…
This paper draws together about 20 years of research work and discovery and the development of a resource about pain assessment and management in children with profound cognitive impairment. The animation tells the story of an imagined child called…
OBJECTIVES: Children with severe chronic illness are a prevalent, impactful, vulnerable group in PICUs, whose needs are insufficiently met by transitory care models and a narrow focus on acute care needs. Thus, we sought to provide a concise…
OBJECTIVES: To identify the prevalence of screening criteria for acute and posttraumatic stress disorders (PTSDs) and stress symptoms among family members of children in the PICU for more than 8 days and examine risk factors for stress symptoms.…
Background: Globally, pioneers in children's palliative care influenced this speciality's development through individual initiatives leading to diverse models of care. Children's and young adults' hospices have now been established around the world.…
BACKGROUND: The use of cannabis for medical purposes by pediatric patients is expanding across Canada; however, supporting evidence, federal regulations and treatment guidelines are lacking. To understand factors affecting treatment decisions in this…
Background: Children's palliative and end of life care is underpinned internationally by a commitment to provide care and support in the family's preferred place, which may include home, hospital or hospice. Limited evidence on models of best…
Children with neurodisability (ND) represent a significant population with a demonstrated need for coordinated support. Patient navigation has a primary focus on: facilitating access to and connection amongst fragmented systems; as well as the…
BACKGROUND: Children at end of life have unique and complex care needs. Although there is increasing evidence about pediatric concurrent hospice care, the health care services received while in hospice have not received sufficient attention.…
Background: Children with life-limiting conditions receive specialist paediatric care in childhood, but the transition to adult care during adolescence. There are concerns about transition, including a lack of continuity in care and that it may lead…
BACKGROUND: Palliative sedation is consciously reducing the patient's consciousness to alleviate the refractory symptoms. However, studies on palliative sedation for children are scarce. We aimed to survey the symptom control and risks for children…
IMPORTANCE: Children with medical complexity (CMC) have substantial health care needs and frequently experience poor health care quality. Understanding the population prevalence and associated health care needs can inform clinical and public health…
BACKGROUND: In pediatric palliative care, irritability of unknown origin (IUO) in children with severe neurological impairment is a peculiarly complex and challenging symptom, yet its etiology remains poorly understood. MEASURES: A structured IUO…
Parents and clinicians caring for infants with neurologic disease often make high-stakes decisions about infant care. To characterize how these decisions occur, we enrolled infants with neurologic conditions, their parents, and their clinicians in a…
As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life.…
Being a parent of a child with spinal muscular atrophy (SMA), a disease that causes progressive muscle weakness, involves a range of challenges. The purpose of this study was to explore what advice parents of children with severe SMA, in absence of…
Communication is essential to providing family-centered care in pediatric oncology. Previously, we developed a functional model of communication between parents and clinicians. Prior research has not examined the domains and purposes of communication…
BACKGROUND: There is a growing body of qualitative studies examining parents' experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting…
There is a growing movement in children's hospice care to offer families time with their baby after death through use of a "cold cot"; however, there is very limited research in this area. We interviewed seven parents (four mothers and three…
BACKGROUND: Electronic medical records (EMRs) play a key role in improving documentation and quality of care in paediatric palliative care (PPC). Inadequate EMR design can cause incorrect prescription and administration of medications. Due to the…
In pediatric settings, the concept of hope is frequently positioned as a fundamental aspect of care and at odds with the possibility and proximity of death. This arguably fosters silence about death and dying in childhood despite evidence indicating…
AIM: To retrospectively explore the perspectives of parents of children with severe neurological impairment (SNI), such as those with severe cerebral palsy, epilepsy syndromes, and structural brain differences, on clinician counseling regarding home…
Few Korean hospitals had experience in pediatric palliative care. Since the beginning of the national palliative care project, interest in pediatric palliative care has gradually increased, but the establishment of professional palliative care is…
Background: For hospitalized children admitted outside of a critical care unit, the location, mode of death, "do-not-resuscitate" order (DNR) use, and involvement of palliative care teams have not been described across high-income countries.…
